One-in-a-million people are living with EHE worldwide.

Our mission is to find treatments and a cure for this rare cancer by advancing research and driving collaboration between patients, researchers, and clinicians.

We envision a world where Epithelioid Hemangioendothelioma (EHE) is easily diagnosed and treatable. Join our dedicated community by subscribing to our emails.

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Cedric Gegel is an actor, director, and screenwriter based in the New York City area. Watch our candid conversation recorded live on Facebook, where we talk about his EHE diagnosis, treatment, and the impact his diagnosis has had on his life. There's even a sneak peek of his work!

Our Giving Tuesday total is a staggering $183,737 and counting! That's $87,237 in community donations and $96,500 contributed by our Board of Directors.

Let’s keep this momentum going! If you haven’t donated yet, it’s not too late—every dollar makes a difference.

We are overwhelmed with gratitude—not just for your incredible support on #GivingTuesday, but for standing with us every single day.

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Stephanie was diagnosed with epithelioid hemangioendothelioma (EHE) in her liver, lungs, spine, ribs, and femur. It's not uncommon for EHE patients to present with metastatic disease. Unlike other cancers, metastatic EHE is not always correlated with a poor prognosis.

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Very recently diagnosed with epithelioid hemangioendothelioma (EHE) Lindsey is now on a treatment plan of "watch and wait" also known as active surveillance. She talks about the support she has received from her community and the responsibility she feels to spread awareness and advocate for people living with EHE and those who will be diagnosed in the future.

EHE Biobank

Patients Powering Research for EHE

Patients are the key to finding new treatments for EHE! Researchers need tumor tissue and fluid from EHE patients to understand disease progression and speed the development of new drugs and therapies.

EHE Global Patient Registry

Patients Powering Research for EHE

The EHE Global Patient Registry empowers people with Epithelioid Hemangioendothelioma (EHE) to join together to improve our understanding of this ultra-rare sarcoma. We need every EHE patient to join this critical tool used to support researchers searching for treatments and a cure for EHE.

Consensus Paper on EHE Management

The Consensus Paper is a powerful, EHE-specific resource for patients, caregivers, and medical professionals that answers critical questions regarding diagnosis and treatment. Patients are encouraged to read it to better understand EHE and facilitate more informed discussions and decision-making with medical teams.

Latest EHE News, Events and Research

2024 Research Grant Awards

The EHE Foundation Announces Grant Funding of $307,400 to Advance Research and Find Treatments for EHE

By The EHE Foundation | November 20, 2024

We are pleased to announce The EHE Foundation’s 2024 Research Grants Program awards, totaling $307,400, as part of our ongoing commitment to advance our mission to find effective treatments and a cure for EHE. Made possible by 2023 Giving Tuesday gifts, these grants support novel translational research projects that aim to identify and accelerate the […]

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Donating vs. Fundraising

Making a Donation vs. Fundraising for The EHE Foundation: What’s the Difference?

By The EHE Foundation | November 4, 2024

At The EHE Foundation, we are committed to finding a cure for epithelioid hemangioendothelioma (EHE), an ultra-rare and potentially aggressive cancer that affects one in a million people. Every contribution helps us advance groundbreaking research, support patients, and foster collaboration among clinicians and researchers worldwide. There are two impactful ways you can support our mission: […]

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EHEF Scientific & Medical Advisory Board

Scientific & Medical Advisory Board Collaborates to Improve Outcomes for People Living with EHE

By The EHE Foundation | September 30, 2024

On September 10, 2024, The EHE Foundation held a virtual meeting of our Scientific & Medical Advisory Board (SMAB). The meeting aimed to welcome new members, review current research projects, and discuss future needs and goals to advance EHE research. The meeting began with a warm welcome to new members of the SMAB: Tom Chen, […]

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test tubes

GDF-15 Predicts Epithelioid Hemangioendothelioma Aggressiveness and is Down-regulated by Sirolimus Through ATF4/ATF5 Suppression

By The EHE Foundation | September 27, 2024

Drs. Silvia Stacchiotti, Sandro Pasquali, and Nadia Zaffaroni (IRCCS – INT, Milan, Italy) and colleagues published their promising findings in Clinical Cancer Research, September 16, 2024. This study, funded in part by The EHE Foundation in partnership with EHE Rare Cancer Charity (UK), aimed to assess the efficacy of sirolimus for the treatment of EHE […]

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Ajay Pobbati, PhD and Brian Rubin, MD, PhD at the Cleveland Clinic

Harnessing Cyclin-dependent Kinase Inhibitors to Gain Mechanistic Insight Into the Regulation of the TAZ-CAMTA1 Fusion Protein

By The EHE Foundation | September 23, 2024

Ajay Pobbati, PhD, Brian Rubin, MD, PhD, and colleagues at the Cleveland Clinic published their findings from the study “CDK9 inhibition by dinaciclib is a therapeutic vulnerability in epithelioid hemangioendothelioma” in Clinical Cancer Research, September 13, 2024. This study, funded in part by a grant from The EHE Foundation, provides a strong rationale for investigating […]

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Community Connections for Caregivers: Anticipatory Grief

EHE Community Connections for Caregivers: Anticipatory Grief

By The EHE Foundation | September 9, 2024

As a caregiver, it can be hard to not think about the future and what it may or may not hold. In doing so, it is common for caregivers to experience anticipatory grief, in which we mourn the loss of our loved one while they are still here as well as grieve the future that […]

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Patty Cogswell

The Importance of Biobanking

By The EHE Foundation | May 17, 2021

Biobanking is a brand-new endeavor for us at The EHE Foundation. Researchers retain frozen and stored tissue and biological samples from surgeries, which usually remains within the institution where the procedure takes place. Today, biobanking is a game-changer for rare disease and patient-led organizations like ours. Biobanks accelerate research by safe-guarding high-quality, donated tissue samples […]

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DNA

Researchers Engineer Much-Needed Mouse Model of a Rare Vascular Sarcoma

By The EHE Foundation | April 20, 2021

Dr. Rubin used a novel approach to target the gene fusion that causes epithelioid hemgioendothelioma, engineering a novel, first-of-its-kind mouse model of the disease, which will help advance studies to identify new treatments. Click here to read the full article. Sharing exciting news highlighting Dr. Brian Rubin’s research at the Lerner Research Institute at Cleveland […]

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Leah Heinrich

Leah Heinrich Participates on Scientific Peer Review Panel

By The EHE Foundation | March 2, 2021

For Immediate Press Release:  SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ RARE CANCERS RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE The Congressionally Directed Medical Research Programs’ (CDMRP), Rare Cancers Research Program (RCRP) consumer advocate Leah Heinrich recently participated in the evaluation of research applications submitted to the RCRP. Leahwas nominated for participation in […]

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